A bright future for 2018
It has been a busy and productive year for MSU. We are sorry so many are still suffering from this rare disease, but there is hope as we are making great strides in helping to improve the lives of myositis patients through many avenues.
It can be difficult for patients living with Idiopathic Inflammatory Myopathies to imagine a bright future, or any future at all. Many patients, after a years-long and difficult diagnostic process, are shocked at being diagnosed with a rare disease and then distressed to learn treatment options are severely limited, and not available at all for some. Patients are also astounded by the lack of knowledge some physicians have about our disease.
Helping patients better understand their disease through education, shared experiences, and compassionate support is a large part of what we do at MSU, and thanks to your financial support, and your time, it is making a difference.
You see, Myositis is not only a rare, complicated, immune-mediated muscle disease:
- It is a skin, lung, heart, neuromuscular, and gastrointestinal disease.
- It is a systemic disease. It can affect many organ systems.
- It is a disease that requires constant adaptation to new challenges, both physical and emotional.
- It is an invisible illness for some, where on the outside patients look “fine” but on the inside their bodies are screaming.
- It is also a completely disabling and even deadly disease for too many patients.
In truth, many like myself suffer each day from either the disease itself, the emotional effects, or from harsh medication side-effects like those that accompany high dose steroids, often the first line of treatment. In fact, steroids, in one form or another, are the only type of drugs FDA approved for treating Myositis, as well as most, if not all, autoimmune diseases.
In our closed Facebook support groups we hear first hand how this disease continues to impact patients. We see so many opportunities to make a difference and we will, together with your help.
One example is pain. Many doctors were taught years ago, and some are still being taught, that pain is not a part of myositis. We have discussed this with many physicians and myositis researchers who have agreed that pain is a part of myositis for roughly 40% of patients.
Learning through shared experiences in our support groups, through direct communications, and through shared stories submitted for our website allows us to take action to ensure your concerns and needs are heard by those who need to hear them. Myositis-associated pain is just one of many examples of the education still needed across the country, and around the world.
Smartphone App for Myositis
We continue to utilize new technologies that are serving us and our constituents well.
Plans are in place to build upon these technologies to create a Myositis smartphone app. Making information, support, and myositis resources easily available and accessible for patients and healthcare providers through a smartphone app is a priority for us. For patients, many have a difficult time using a traditional computer or laptop due to muscle weakness, fatigue, and pain. We also find that the majority of our members are using a smartphone to access our information, education and support platforms, as well as our other myositis programs and services.
This smartphone app is an important, and expensive, development endeavor that can only be realized through ongoing financial support. We will collaborate with many different organizations, physicians, and other healthcare-related institutions as we continue to plan and develop the app. We will be releasing information about the mobile app objectives in mid-to-late 2018 and we are excited!
Let’s Give Myositis Patients A Future!
There is still much work to be done to ensure physicians and healthcare providers are well-educated about myositis and associated overlaps and complications. We still need treatments specific for the various types and subtypes of Myositis. We will continue to partner with researchers and pharmaceutical companies, and match patients with clinical trials in hopes of helping to bring Myositis treatments to market.
Did you know that one of many difficult parts of setting up a clinical trial for a rare disease is patient recruitment? This is where we have already made a difference.
While a cure is what we wish and hope for, we believe having safe and effective therapies targeted for inflammatory myopathies is a great step forward.
Through hard work, 2018 will be even better
Through the many existing and upcoming programs and services for myositis patients and caregivers, along with educational materials for physicians, nurses, physical and occupational therapists, legislators, and other healthcare decision-makers, and our efforts in assisting in research and clinical trials, 2018 is going to be an even better year.
Continuing to provide financial assistance to those in need who may lose their home, have their utilities shut off, incur major medical debt, or need to travel away from home to see a Myositis specialist is another important priority for us. Many chronic disease patients are devastated financially, through no fault of their own. We want patients to focus on their health and not stressing over their finances, which is known to cause flares.
Our plans also include expansion of our online video patient support, education, and activity sessions. We will offer new education topics and webinars, both patient-led and expert-led, new online activities such as Chair Yoga, and we will continue our very important online patient video support sessions.
Meeting other rare disease patients face-to-face can help make a huge difference in not feeling alone in this journey.
Rare Disease Week 2018
As we close on a tumultuous year in the U.S., we will be working together with other advocacy organizations to help fight to protect the much needed programs that are under attack that assist patients of all types, especially rare disease patients.
I will be attending Rare Disease Week this year in Washington, DC. This is a great opportunity to make my voice heard, as a myositis and rare disease patient and as the president of a patient-centered nonprofit. Will you join me?
You, too, have a voice and if you are able to join me in Washington, DC for Rare Disease Week, that would be a great show of unity to support the important work these advocacy organizations do for us, and an important learning opportunity. We will be sending out more details on this soon so if you have not yet subscribed for our email updates, please do so here.
Myositis patients are one of the most educated patient groups and we have heard this from many doctors.
Are our goals lofty? Yes, because we are Myositis patients and caregivers. We live this disease day in and day out, just like you. From our experiences and through direct patient communications, we know what is needed and we know how myositis affects every single aspect of our lives.
Passion, Dedication, Hope
I am passionate about MSU, our mission, and the work we do and the goals we have set. I am fully committed to seeing our mission and vision realized. We have dedicated volunteers and board members ready to do the work. The potential obstacle is funding.
There is only 1 day left to make your tax-deductible donation to help ensure we are financially prepared to make the largest impact and to reach the goals we have set forth.
We have made giving really simple this year by offering several ways and various platforms for which you can make your donation. Also, volunteering is another important way to contribute.
Happy New Year!
As we embark on a New Year, I want you to know that I sincerely thank you for your support today and everyday. I look forward to continuing our work together as a community in reaching new heights, and in giving Myositis patients, like you or your loved one, a future that is brighter than ever imagined.
Myositis patients are one of the most educated patient groups and we have heard this from many doctors. Keep up the great work and keep fighting myositis.
Enjoy the New Year holiday and again, I thank you, and so does the entire team at MSU!
With Gratitude and Hope,
Myositis Support and Understanding Association
Patient-Centered 501(c)(3) nonprofit organization
MSU was founded by Myositis patients and is fully volunteer-managed by patients and caregivers.
Tags: myositis rare disease